Posted by Marly Silverman at 9:52pm on October 29th, 2010Dear Friends,Please find below the Official Comment, which PANDORA has posted on the article written by Nelda Holder published by Mountain Xpress, a local newspaper in Asheville, North Carolina (Buncombe County).

October 29, 2010

P.A.N.D.O.R.A. is thrilled that Ryan has been reunited with his family. Our Call to Action supported by 23 other organizations in the U.S., including the Wisconsin ME-CFS Association provided some comfort to Ryan and his family during his horrific ordeal. But there are many issues that need to be addressed by local county and state officials:1) The lack of physician education in Buncombe County on NeuroEndocrineImmune Disorders such as CFS-ME, fibromyalgia, Gulf War Illness, Multiple Chemical Sensitivity and chronic Lyme Disease, and other related illnesses.2) How are the Baldwin's going to restore their personal reputation in their community? What legal remedies do they have? Who is responsible for this fiasco?3) The fact that a heavy hand and unorthodox efforts were used by Buncombe County family health officials and social workers involved in this case, resulting in potential abuse of parental rights as well as child's rights.4) The fact that county and state officials, including the governor's office, who were contacted by P.A.N.D.O.R.A., refused to look at the allegations of heavy hand and unorthodox efforts on Ryan's case, citing that the court and the legal process could not have been changed, therefore allowing one of its most fragile citizens - a disabled minor with a severe debilitating complex illness, to be placed in a foster system known for its weaknesses in protecting children's best interests.5) The fact that the most damaging charge against the parents - Factitious Disorder by Proxy, was immediately dropped. It was demonstrated that the child health did not improve after they removed him from his loving family, quite contrary.

We have contacted MAHEC - Mountain Area Health Education Center in Asheville, with the intention to collaborate and provide CME (continuing medical education) credits for physicians in the area. We were told that they could not continue their collaboration with us, because some individuals who are part of the board advising "MAHEC felt that "CFS is a gray area in medicine. They also stated that if they were to do this in collaboration with P.A.N.D.O.R.A. “it would show a bias.” How can it be? We have collaborated with other health agencies throughout the country in providing medical and patient conferences in Florida. So the question remains... why do they drop this educational effort in collaboration with P.A.N.D.O.R.A? If not now, when will it be the right time?

We were also told that “they would create a program of their own soon”, and so far we have not heard of any efforts from MAHEC officials in Buncombe County to educate physicians in North Carolina.

More needs to be done in the area of physician, social services and school personnel education in the state of North Carolina and Buncombe County should learn from its lessons. We sincerely believe that had these physicians and social workers been provided training on the difficult medical challenges, which a family with a child with CFS-ME and fibromyalgia experiences, this case would NEVER have made to the court system. The tireless efforts, financial and personnel resources used in the process of taking one very sick child away from his loving parents and from the safety of his own home, was at a considerable cost. From the use of the county attorney, paralegal services, social workers, foster parent payments, court costs and much more, we can clearly state that this was a waste oftax-payer’s money.

While we all wish Ryan to recoup emotionally from this trauma soon, it does not escape us that the anniversary of Ryan's reunion with his family is quickly approaching on Thanksgiving. We know that this will be a happy occasion. We are grateful to the Whittemore Peterson Institute for including Ryan on their XMRV research studies and providing Ryan and his family with a life-line, which includes potential medical treatment.

Unfortunately there is still much to be done in Buncombe County regarding NeuroEndocrineImmune Disorders medical challenges and how much suffering it brings to families and patients afflicted with these illnesses. We are yet to see a change towards the right direction by officials addressing these challenges. We believe that the time is now, to prevent another family from going through the same emotional, physical and financial traumas the Baldwin’s experienced. Let’s get it done!